Neurorehabilitation and Neural Repair

In June 1993, the Consortium of Multiple Sclerosis Centers sponsored a multidisciplinary conference in Denver, Colorado. The theoretical underpinning of the conference was a new approach to conference development, dubbed the "What Do We Know?" model. This model charges participants to evaluate what is known about MS care based on literature reviews, to ascertain how care is actually practiced, and to identify gaps in existing knowledge through this process. A significant outcome of the conference was the development of research questions and designs that will ultimately lead to multicenter clinical studies.

The neurology panel reviewed the natural history of multiple sclerosis, therapy of acute exacerbations and chronic progressive disease, outcome measurement, and sexual dysfunction. A survey conducted among neurologists, both MS specialists and generalists, revealed widespread use of high dose pulse methylprednisolone therapy, prevalent use of oral corticosteroids, and anticipated acceptance of interferon 1 beta therapy. Studies confirm that MS is usually a progressive disease, with half of patients requiring gait assistance within fifteen years of onset, but the illness shortens mean life expectancy by only six to seven years. High dose intravenous corticosteroids or ACTH hasten recovery from acute attacks, but the effect of oral corticosteroids in moderate doses has been called into question by recent trials in isolated optic neuritis. In these studies, patients treated with oral prednisone had a higher frequency of relapse and a higher rate of conversion to clinical MS than did patients treated with high dose methylprednisolone. Improved outcome measurements are needed, as existing clinical scales have many deficiencies. Magnetic resonance imaging will probably find expanding use in clinical trials. At the "What Do We Know?" conference, preliminary plans were formulated to establish a research consortium, tentatively called the North American Research Consortium on Multiple Sclerosis (NARCOMS), to investigate clinical issues in MS. Despite evidence that sexual dysfunction is prevalent in MS, specific data, especially of a prospective nature, are insufficient. Therefore, the neurology panel proposed the development of an instrument to evaluate sexual function in MS longitudinally.

A nursing specialty research panel was assigned the task of developing research questions pertinent to the issue of bladder management and skin integrity in multiple sclerosis. Review of the literature highlighted a gap in nursing research specific to nursing practice. Surveying colleagues at other multiple sclerosis centers revealed an inconsistent practice pattern.

We believe that urinary tract infections can lead to worsening of MS symptoms and that urinary retention is a common cause of urinary tract infections. The technique of intermittent-self-catheterization is taught to patients to decrease urinary retention. The first research question addresses recommendations for catheter reuse.

Additionally, skin breakdown is frequently referred to as a complication of MS. We do not know the incidence and prevalence of skin breakdown in this population. Moreover, we do not know the specific risk factors for skin breakdown in MS clients. The Braden scale has been utilized to predict pressure ulcer risk in the geriatric population. The pressure ulcer study being planned by the MS nursing specialty panel intends to examine the utility of the Braden scale to predict skin breakdown in MS patients.

Both studies will include patients with clinically definite multiple sclerosis from MS centers within the Consortium of Multiple Sclerosis Centers.

In September 1992, the Executive Committee of the Consortium of Multiple Sclerosis Centers selected members for the physical therapy specialty panel. The group's responsibility was to review current literature and clinical practice on spasticity and balance in multiple sclerosis care. This task was achieved through individual work and conference calls and the results were reported at the multidisciplinary "What Do We Know About MS?" conference in June 1993. With input from forty other health care professionals experienced with MS care, two research questions were generated by the physical therapy panel. The question for balance was "Which of the three clinical measurement tools—Tinetti, Berg, or Functional Reach—is the best predictor of falls in the MS client, and how do they correlate with an experienced clinician's subjective evaluation?" The question for spasticity was "Will a daily stretching program result in decreased spasticity severity and improved functional mobility in ambulatory MS clients?" The findings from the spasticity question will provide a scientific basis for a common clinical practice in MS. The findings from the balance question will validate reliable clinical tools that may assess risk for falling in MS clients. The experience and findings were shared at the annual Consortium meeting in Victoria in September 1993.

Fatigue and mobility are significant factors in determining quality of life in patients with multiple sclerosis. This paper briefly reviews what is known about each factor and what is currently being done clinically about each factor. We also propose research designed to enhance the ability of clinicians and patients to reduce the negative impact of increased fatigue and reduced mobility in MS.

This article describes the process and findings of a subcommittee of speech-language pathologists formed by the Consortium of Multiple Sclerosis Centers. Its purpose was to study MS patient-care issues as they relate to communication disorders and dysphagia. To determine "What We Know," a literature review of eighty articles was performed about MS care as it relates to aphasia (5), auditory deficits (7), dysarthria (7), dysphonia (2), dysfluency (1), dysphagia (9), language disorders (5), and cognitive deficits (43). However, because of the lack of current studies, "What We Believe" was examined through the development of a practitioner survey. Thirty-six speech-language pathologists who provide MS care responded. Results were analyzed, gaps were identified, and questions were raised. This information was presented at the June 1993 CMSC: MS Care Conference in Denver, Colorado. To address "What We Do Not Know," this specialty group then met with an interdisciplinary group and a research panel to facilitate the formulation of two research proposals. The questions developed were: (1) What is the prevalence of language and communication disorders in multiple sclerosis? (2a) Is dysphagia therapy effective in reducing medical complications? and (2b) Which dysphagia treatment is more effective: restorative or compensatory?

The counseling group was responsible for addressing the topics: (1) the impact of MS on family functioning; and (2) the impact of MS on sexual functioning. The work group included three social workers and a clinical psychologist. A medical sociologist was the research consultant. All five members of the committee participated in all aspects of the project. In preparation for the June 1993 conference, "What Do We Know About MS?," the work group used a series of conference calls to plan and complete literature reviews and clinical surveys on these two topics. During the June meeting, the group members used plenary sessions and small group discussions with peers from related fields to specify research questions for the two topics and proposed methodologies for each. It was agreed that the research proposals generated through this process would be of practical benefit to medical and rehabilitation specialists as well as mental health professionals. The proposed research questions are: (1) Are key aspects of a patient's adjustment to the first exacerbation following the diagnosis predictive of that patient's adjustment to the next exacerbation? (2) What is the relationship between sexual attitudes and adjustment to sexual dysfunction in MS?

Multiple sclerosis (MS) patients often present with difficult neuropsychological and emotional problems. This article describes work undertaken by the psychology specialty panel in conjunction with a June 1993 Consortium of Multiple Sclerosis Centers (CMSC),sponsored conference entitled "What Do We Really Know About MS?" We summarize our critical review of one hundred seven controlled studies of cognitive dysfunction, affective disorders, and stress in MS, emphasizing what we know, what we believe we know, and what we do not know but need to know. We also present results of a survey of seventy-six MS practitioners (neurologists and mental health practitioners) covering beliefs about these topics and clinical practices, and we highlight discrepancies between our empirical knowledge and current clinical practices. Based on our literature review and practitioner survey, we identify critical gaps in our knowledge, highlighting the need for research on treatments for MS-related cognitive dysfunction, assessment of affective disturbance in MS, and effects of stress on disease activity.